What were your first autoimmune symptoms? When did you learn what it was?
I had chronic bloating, abdominal pain and diarrhea that started when I was 8 or 9 years old and during late adolescence I was diagnosed with Irritable Bowel Syndrome. In my twenties I developed anemia, joint pains, Raynaud’s phenomenon (my hands would turn cold and white), and was extremely fatigued. I was diagnosed with Hashimoto’s Disease (autoimmune hypothyroidism) when I was 26 and Celiac Disease seven years later.
Can you describe what it was like for you, when your condition was at its worst?
My entire body fell apart after I had my 3rd child in 2009. I had constant diarrhea, diffuse joint pains, including arthritis in my lower back, canker sores throughout my mouth, and I began to bruise very easily. I became lactose intolerant for the first time in my life. My hair became brittle and my nails stopped growing. I also felt like I could no longer think clearly, like my brain was in a fog. I ran a daily fever as well. I delayed getting evaluated because I was preparing for my Neonatology board exams, which only take place once every two years. I was positive that I had lupus, rheumatoid arthritis, or some type of cancer. I was relieved to find out that my symptoms were from Celiac Disease, as it was nice to have an answer.
What sort of diet do you follow now?
I am gluten, soy, and sulfite free, as well as dairy and grain light. I developed a soy intolerance in 2011 and a sulfite allergy in 2012.
How quickly did you see results after going gluten free?
I started to feel better shortly after going gluten free. My energy returned and my digestive symptoms improved by about the 2 week mark. After about 6 months of being gluten free, I felt the healthiest that I ever had.
What symptoms still remain?
I developed a gluten-related peripheral neuropathy, numbness and tingling in hands and feet, in 2012. My neurologic symptoms resolved when we removed all gluten from the home (despite being as careful as I could I was getting exposed to traces of gluten). I have experienced the neuropathy only twice in the last 9 months, both times after getting cross-contaminated while traveling.
What other areas of your health improved simultaneously?
My anemia improved quite a bit and my dose of Levothyroxine for hypothyroidism decreased. My hair and nails began to grow again and my exercise endurance improved quite a bit. People stopped telling me that I looked “tired” all of the time. I also had a tendency toward depression, and this has also improved since removing gluten from my diet.
What other things do you do outside of diet to support your health and healing?
I am a runner and try to run 3 to 5 days per week. I will be running my second marathon next month. I practice yoga on a regular basis. I also take a daily multivitamin, Vitamin D, B12, and folate supplements, as well as a probiotic. Goofing around with my kids is probably the best medicine!
What are the challenges for you in sticking to the diet?
I find that I have the most difficulty while traveling. Although I try my best to research restaurants ahead of time, a lot of the time we are on the road and are limited to fast food chains (which I refuse to eat at). I always travel with my own stash of food and snacks. I have survived for days on bananas and sweet potatoes!
What Celiac related symptom surprised you the most? The peripheral neuropathy really surprised me as it developed after 2 ½ years of being gluten free and I really thought that I had been doing everything right.
Is your family also gluten free?
Yes. Although I am the only person with Celiac Disease, my husband and four kids went gluten free in 2012 when I developed the Celiac-induced neuropathy.
What sort of advice would you give to people newly dealing w/ an autoimmune disease, specifically Celiac?
To be patient with yourself and your body as you recover from the damage from this chronic illness. To know that we all make mistakes that lead to “glutenings, ”especially at first, but that it gets easier to live gluten free with time. I think that it’s really important to connect with others with autoimmune diseases, whether it is in person or via online support groups. Also, to really listen to your body’s signals, i.e. rest if your body is screaming at you to take it easy.
In what ways does it benefit you to be a doctor & a patient? Is it ever hard?
My Celiac diagnosis put me in the position of being a patient for the first time in my life. Although I had seen doctors my entire life, I had never identified with myself as a patient. Being a patient has helped me to connect to my patients’ families and I believe has made me a better doctor. My biggest challenge has been trying to teach my medical peers about what it is like to actually have Celiac Disease, especially that it is not an easy disease to have.
What do you think is the most frustrating part of dealing w/ Celiac disease in the medical community? Do you encounter a lot of misinformation among colleagues, as many patients seem to report?
There is a perception that if a patient has Celiac Disease, that as long as they eat gluten free foods, that they will be fine, despite research showing the lack of bowel healing and the prolonged persistence of symptoms in many Celiac patients. While most of us learned about “classic” presentations of Celiac Disease in medical school, many doctors are still not looking for Celiac Disease in patients with atypical presentations, i.e. unexplained anemia, infertility, and neurologic symptoms. This is very frustrating to me.
Do you think you are better able to identify potential Celiac patients now, than you were pre-diagnosis? Do you think knowing the disease personally has made you more capable of picking up on the confusing symptoms in others?
I see Celiac Disease everywhere, now that I know what to look for. Although I do not see patients with Celiac Disease myself, as I take care of premature babies (who fortunately do not have Celiac Disease), I have encountered many mothers of patients who have concerning symptoms. Unfortunately, a lot of these women have declined testing.
What one piece of information do you most wish was better understood about Celiac?
That Celiac Disease is a chronic, lifelong autoimmune condition, the treatment of which requires much more than just eating gluten free foods. Most of us require vitamin and mineral supplements in addition to the gluten free diet. Getting enough rest, exercise, and proper nutrition are important as well.
What do you think the medical community could be doing better in terms of treating Celiac patients?
First, practitioners need to be able to recognize the symptoms of Celiac Disease so that people can be diagnosed. Secondly, the diagnosis needs to be done correctly, while a patient is eating gluten. Thirdly, the gluten free diet needs to be taken as seriously as any other medical treatment, such as insulin for a diabetic. Lastly, it is crucial that patients have their nutritional status (i.e. iron, Vitamin D and B12 levels) monitored on a regular basis, as in many cases this is not happening. Patients are being told to only stop eating gluten and that is not enough. Celiac Disease needs to be taken more seriously by both doctors and patients